“This existence of ours is as transient as autumn clouds
To watch the birth and death of beings is like looking at the movements of a dance
A lifetime is like a flash of lighting in the sky
Rushing by like a torrent down a steep mountain.”
– The Buddha
What would you do if you had 10 years left?
This is a question with which I am intimately familiar.
During the worst moments of my cancer treatment the suffering was unrelenting—waves upon waves of physical and emotional pain knocking me down before I could get up again. There were mouth sores so raw I begged a nurse to give me novocaine, physical pain that woke me up in tears, cramps of nausea that left me looking at food, starving, but unable to eat it. Then there was the psychological terror of knowing I was living a nightmare I could not escape. It was in these moments that I’d play little games in my mind.
The first little game I played was imaging to whom I would give my cancer if I could make someone else bear the burden instead of me. I’ll be honest and tell you there was no person, other than my brother, whom I would not have cursed with the worst fate imaginable if it would have made my suffering end. My parents? Well obviously, they would have taken it from me if they could. Acquaintances? Sure, of course. What about friends? Close friends? Friends’ children? Oh yes, all of them, too.
I found it funny (in a morbid sort of way that one finds things funny in these kinds of situations) that people reading my blog called me “brave” and “courageous,” when little did they know I would have killed them, too—would have wrapped my hands around their pretty little throats and strangled the life out of them if it would have given me one moment of relief.
The other little game I’d play was to pray. It was a game because I knew no one was listening, but still it gave me some measure of comfort to imagine there was a higher power out there with whom I could bargain—perhaps we could come to a mutually agreeable arrangement?
Oh, I made all sorts of promises. At first I promised that if I survived I would never make another mistake, never hurt another person, because after so much ceaseless suffering it’s hard to come to any conclusion other than you must be here because you earned it, and because you deserve it.
The worse things got the more I escalated my promises and reduced my demands. If only I could make it through this horrible experience I wouldn’t need much. Couldn’t I just have 10 more good years? I would live to 45. And you can do anything in 10 years!
You could build a business, learn any skill, make a lot of money. You could write a book… multiple books, maybe even win a Pulitzer prize! You could get married, start a family even… you couldn’t live to see them grow, but still, I was in no position to be greedy.
Well, I survived, (the details of how are described in other blog posts), and since then my promise has never been far from mind. I set about reconstructing my life with a relentless pressure believing in my heart I had only 10 years to accomplish all I was meant to do. How could I not keep my promise when the universe had done its part?
And it was not the sickness that was the hard part, but the recovery. It’s easy to get cancer (only a little bad luck is needed) but it took a special type of grit for me to put all the pieces back together afterward, and that’s what made me proud.
In a few short years I met my future husband, got married, graduated residency, took my psychiatry residency boards (and got in the top 10th percentile), got off opiates, put myself on an anti-chronic fatigue regimen that recovered my energy (which I have since taught patients), started my practice, built the practice so full that I could barely take on new patients, and started a promising online course teaching holistic treatments for anxiety.
Damn, it felt good.
When I turned 36 at the end of last year (“year one”) I pulled out my moleskin notebook and multicolored pen set and diagramed out my goals for the decade to check that my first year’s accomplishments were on track. They were.
But who wants to live like they only have 10 years left? Buddhists talk about meditating on death to appreciate life, but let me assure you it’s overrated, and a luxury afforded to those who are not actually dying. I much preferred being able to take life for granted, to make plans without pressure, to imagine a future that was guaranteed, and to live as if I had all the time in the world to do what I wanted to do.
Only recently—in the last six months perhaps—has the pressure started to fade. It happened naturally, without effort, as an inevitable conclusion of life proceeding normally.
Maybe I didn’t have to complete all my goals in 10 years… maybe I’d have a little more time. I started to take vacations. I noticed my first few grey hairs and wondered if I should keep them or dye them. I noticed the first signs of aging in my face—just a subtle loss of elasticity—and wondered if a mini facelift at 48 would do the trick.
I planned a once-in-a-lifetime trip for August with my husband. We would have flown to London to visit friends, then to Zurich to connect with my birth mother and two of her sons, my half-brothers (I’ve known all of them since I was 17), then taken a train to Frieburg, Germany to meet my Moroccan birth father and his daughter, my half-sister, for the first time. I splurged on business class tickets because my husband is a special snowflake when it comes to sleep and I wanted him to be happy.
But—and you knew there was a but, didn’t you?—as all this tension I felt started to weaken, something much more sinister was growing.
It started in July, so similarly as before. First a cold that turned into a cough that didn’t go away. Then a feeling of pressure in my chest that weighed me down as a tried to sleep, so I shifted from right to left to center trying to find the position where I could best pretend it wasn’t happening.
During the day I felt fine and made jokes that this was how my cancer started the first time, and people laughed.
I put it off for as long as I could. Last month, in early August, I sat up with my husband at night and told him the same words I had said over five years ago—”Something is wrong with my lungs.”
The next day I cancelled my morning patients and we went to the ER. I knew it was serious but was hoping it was something a little “less serious” like a pulmonary embolism or heart attack (a girl can dream, right?).
The workup (chest X-ray, CT scan) was fast and by midmorning I knew. They told me right before I was wheeled away for a Doppler to look for blood clots (which now seemed like a pointless exercise) and as I left my husband in the ER room I saw him put his head in his hands and start to cry.
I was admitted to the hospital to start chemotherapy immediately. I spent those first few days in disbelief or crying. I honestly didn’t believe I would ever relapse (although on the other hand—and this is perhaps a topic for a future post—I planned my life as if I would).
I cried because I couldn’t fathom going through the treatment again, and briefly considered not doing it. I cried because I emailed my patients to tell them what was going on, and got so many messages in response telling me to focus on myself because the world needs me and I realized that I really, truly, do not want to die.
I cried more because I couldn’t go to my trip to Germany. The day before I went to the ER I had messaged my half sister and told her how excited I was to meet her, and where we were staying in Frieburg and maybe we could meet for lunch on Wednesday? She messaged me back two days later to confirm (at which point I was already in the hospital) and when I saw her message I sat there clutching my phone, my thumbs hovered over the screen, having no idea what to say.
The cancer is the same as before— a chest mass that is a relapse of my T Cell Acute Lymphoblastic Lymphoma. The plan is a different this time and the prognosis is… less hopeful.
First I will do a few rounds of Hyper-CVAD (the same initial chemo regimen I did before) which will hopefully put me into remission, and then I will get a bone marrow transplant.
In terms of survival, I won’t put numbers here because my husband will read this and hearing any numbers gives him a panic attack. You can google “prognosis relapsed Acute Lymphoblastic T Cell Lymphoma” if you want to know.
Numbers aside, understand that I already know I’m a person and not a statistic. In the end, though, even if I end up on the good side of a 1 or 2 or 3-year survival curve do you think that’s all that I want?
No, I want 10 years. It was promised to me. I went through all that pain and torture over 3-4 years expecting 10 good years in return, and I got less than two.
And if I’m honest (and maybe this is the problem, that I wasn’t being honest the first time) I’ll want another 10 years, too. And then another, and another… enough decades that when I do die (because we all die eventually) it will be without the feeling that I have now—the sinking realization that something has gone horribly wrong for me along the way.
****
So now being a seasoned cancer veteran (a sad claim to fame) I know I will get sincere comments and emails from people asking me what I need or if there’s anything they can do to help.
First, please don’t feel obligated to do anything for me. I probably won’t have the energy to take you up on any offer or respond to messages (although I will appreciate reading them). Mail will be hard for me to handle. I also DON’T want advice.
Now I’m just going to be straight with you about what I DO want because if you’re able to help me with one of these below things, it will be the most meaningful way you can help me:
#1: Help me get a book deal: I’ve been working on my book the last couple years (a memoir about my cancer experience) and have a near complete proposal done, but have slacked on submitting it to agents because I’ve been so busy with my practice and I’m not that familiar with the publishing world.
If you have any helpful connections to agents or publishers (or are one), I want to hear from you. Being able to put this book out into the world is probably the most important thing to me right now. If you’re reading this in email hit “reply,” or just email me at elana(at)zenpsychiatry.com. If you put “Book Related” in the subject line it will help me see your message faster.
#2: Register to be a bone marrow donor: I actually just found out that there are several potential matches for me on the bone marrow registry database, which is a huge relief since I am adopted and mixed race and don’t have any full biological siblings. My transplant team is in the process of reaching out to these people to confirm they are available to donate, so somewhere out there is a stranger who will hopefully save my life. If this is something you’d be willing to do for another person, sign up to be a donor on the Be The Match website. It’s especially hard for minorities or mixed race people to find a match, and the difference in prognosis when you have a full match is significant.
#3: Help me get my goddamn money back from American Airlines for my trip to Germany: [Update: AA has refunded my ticket thanks to you guys!] thought that getting lymphoma a week before my trip and needing a bone marrow transplant would be a reasonable excuse for a refund (especially for a business class ticket), but apparently they disagree. They did offer me a voucher, which I appreciate, but there’s no way I’ll be able to use it within a year, and it feels overwhelming to have to coordinate other people using it and paying me back with everything else going.
You can use Twitter to tell them your thoughts at @AmericanAir (cc me @ElanaMD), or Click Here to Tweet my Pre-Written Message. As a side note, American Airlines has a collaboration with Stand Up To Cancer (who incidentally interviewed me a few months ago)… and I feel like if you’re going to do something like that you have to practice what you preach and be compassionate to people in extreme situations.
Thank you for reading and I hope to write another post soon with an update.
No words or advice * Just Big warm squishey healing {{{{Hugs}}}} *
Sending Love and Light best wishes for healing and a positive response to your stem cell transplant.
May you enjoy many more decades of Life.
Rosary beads for you, beautiful lady! I pray each night, and I know that our Blessed Mother will listen and intercede. Blessings to you and your husband! K
Thank You, Dr. Miller.
Now, do you have need for a bone-marrow match; at this clinical stage?
Lastly, if so how does one get pre-screening for the designated match to your person….if it’s a compatible one?
P.S.: My prayers.
Click the Be The Match link Elana included in her post to register to be a donor. They’ll send you a kit in the mail and you’ll then be in the database to contact if you come up as a match.
Hello,
I’m sorry this happened again – it sucks. It just sucks. I work at Be the Match (not in the donor/patient area though) and am so glad that we can help you and thousands others. YOU are exactly why we do what we do everyday. Thank you for asking people to join the registry! Sending good and positive healing thoughts your way…
Hoping my tweet and added comment went thru. Do not know how to cc.
Can not help with other requests,too old for marrow donations.
As one of your mamas who has been with you from the beginning of this ‘journey’, I can only send love and strong doses of hope.
Please try to send updates or get someone to do it for you.
Big,strong cyberhugs.
I have been following you for years. I am very sorry for your reoccurrence. I follow you both as a psychotherapist and as a caregiver to my husband, who like you, is a cancer veteran. And although we don’t know each other, I do hold you close to my heart as I appreciate very much what you have to offer the world, and your efforts to do so. You are an inspiration. My husband’s lymphoma has visited us 4 times, and involved 2 stem cell transplants. He’s alive. He’s okay. The success stories are important to hear. I know your cancer is complicated, as well was his. I am on the donor list, and if I was a match, I would happily give you my stem cells. I wish you the quickest return possible to the life you were living.
❤️❤️
My daughter passed away in February of 2013 of AML. She was 35 with a 2 1/2 year old son. She was diagnosed June 30, 2011 (her birthday) and we had a family trip planned to Italy in September. We had her doctor write a letter stating we were all unable to go since she would need continued care for a long time and we all needed to be here to accomplish that. They wanted to allow us a trip within a year. Her doctor stated this would not work in this case since she would not be able to travel and would continue to need care. We bought the tickets through AMEX and they refunded all of our money. Just a thought. I am so sorry – I give you my love and hope.
I am about to tweet about the airline Twats! Also I am already on the marrow registry. I have no publishing contacts but if I did…. Lastly this sucks and I hate it!
My heart sank while reading your post. There really is a “higher power.” He was listening all along to your prayers and still is. His name is God and through his stripes you have been healed. One needs to believe to receive it and I pray that you will find Him. This is His hope for all of us. I’m sending you His love and praying that you will find Him, learn to trust Him and be healed.
P.S. I totally get what your husband is feeling. I’ve been there myself with my late husband. I pray His peace that only He gives will comfort you both.
Hi again & have you ever thought about Patreon? as just another revenue stream 🙂
My Dear Elana: I followed you from your first day of diagnosis. It got to the point – happily – where you weren’t sending out emails and I was so happy NOT to hear from you because I took that to mean you were busy and doing well. One of the last emails I got from you had a pic of you and your (adorable) husband and you had a flower in your hair. When I saw this email from you I had a premonition and didn’t want to read it ( but I did).
I wish I were a book publisher but I’m not, and I’m too old for bone marrow, but I am really good a writing bitchy emails to American Airlines. I sent your Tweet and a few of my own. I’m also sending you my prayers – although I’m not much of a believer either- but you never know, right? And a big virtual hug. And a big middle finger to the universe in general. XXOO
Have you been in touch with Suleika Jaouad? She wrote a column for the NYT about having cancer as a young adult and is half Moroccan, interestingly.
Having followed you from the beginning, I send you now, all positive thoughts,
Hi Elana – your news really hit me. l am thinking of you bigtime, you are just wonderful. You *are* wonder! Thank you for every single word you wrote here at such a devastating time for you, it’s unimaginable what you’re living through right now. l am so so sorry. All my love, Sharon 💗
I wish I could help more. I’m a retired RN from Johns Hopkins. I did write AA to ask them to refund your money. Peace.
The best to you, Elana. I don’t say many prayers, but you are an exception….
Don Livingston
How else do I reach American Airlines I do not have Twitter account
I was sad to see an email from you in my inbox, honestly, I had forgotten about you and when I opened it up I remembered and my heart sank. I’m so sorry. Hoping for the very best for you. I have been signed up with be the match for over 20 years now and have fundraised for LLS.org through Team in Training for 3 different events. I have tweeted American and I truly believe they will refund your money. I will also share this on FB to see if others will tweet as well. I want more and more updates from you for years to come.
I am so sorry that you have to go through this again. I wrote an email to American Airlines because I don’t have Twitter and I think it could be more effective. I will let you know their comments as soon as I get them.
Keep fighting. The world needs you. ♥️
You’ve been in my thoughts constantly since your email hit my inbox. There are just no words to tell you how sorry I am to learn the cancer has returned, you bright, beautiful and brilliant woman.
I did want to share one possible adjunct to your chemo that you’re probably aware of. Dr. Valter Longo at USC’s Longevity Institute has been running clinical trials for a pre-chemo fasting mimicking diet that seems to dramatically increase the chemo success rates and minimize side effects. Perhaps it would be of some help.
I am devastated for you and couldn’t even read your email while at work for fear of crying since I had quickly skimmed it waiting for the BUT. I have been on the bone marrow registry for many years and easily retweeted your message to AA. All who have followed your journey feel invested in your hope for another 10 years. I believe I found your story on Facebook many years ago while you were detailing your early journey and have followed you ever since. Hopefully posting your requests on all social media will help spread the word. Praying for you and your husband.
Dr. Miller, Elana-
So sorry you are going thru this again. I have been following you thru all these years. You are a very courageous and brave woman. I am going to share your post on FB and ask my friends that tweet to help with the AA problem. I don’t tweet but if I can send an email to AA I will do so. Such heartlessness is not acceptable.
Prayers, positive vibes, and much love are being sent to you.
Sweetheart I am so sorry to read this. I followed your first battle with cancer and will await updates as you post. I will write AA too, they should be ashamed of themselves.
Much love and healing thoughts I’m sending your way.
What a shocker!!! All I can say is hang in there and tackle this (again) with your usual humor, finesse and LOVE. You have many people in your corner praying for you. I’ve tweeted your info, I mean to say, what is the matter with these airlines??? OK, the biggest of Hugs & Love heading your way from Atlanta…xoxoxo
Hi Elana, I don’t know you but I have found your life and journey inspiring for many years. This post is also inspiring even though I feel so awfully bad for you. Such rotten luck. I wish you the best with your book deal. I’m sure I’m one of many who would love to read it.
Beautiful beautiful Elana, my heart is broken. There truly are no words to express how I feel. I have followed you from the very beginning. You will always be in my prayers. Fondly, Marsha
Elena,
I was so thrilled to see your email pop up and then so thoroughly devastated to read it, I am so very sorry for the reoccurrence. I have learned so much thru your emails and teachings over the years, thank you. Buddhism is a warm solace, which is how I found you thru the name Zenpsych. There is no lesson to be learned from this however, except that karma is not perfect. Healing meditations and love for you and family coming your way.
Namaste.
Cindy
Dear Elana,
My heart is breaking as I read this news. I am so sorry that you have to endure this again. My son had a BMT for CML, so i have some understanding from the other side of the bed. I did send an email to Sulieka Jaouad. She has written a book and it is due to come out next year sometime. I am hoping she will be in touch with you or you could even contact her yourself (if you are feeling up to it) I gave her the link to your blog post so she will see how to contact you. I also sent message to AA about the refund for the trip, so hypocritical of them to team of with SU@C and then have no empathy for situations like this. I carry you in my heart and in all you have gone through you are an inspiration. Your expression of the raw pain, the anguish of grief and loss and all the feelings are on point and I appreciate that you do not sugar coat any of it. May you be surrounded by love and support and guides who will help you find the slivers of light and hope as you walk through this darkness that is cancer again.
Elana, I have a friend (college mate of my mums) who is an Psychiatrist (MD) and Anthropologist (PhD). I asked her for any “ins” with publishers and forwarded your (poignant and well written) entry and this is what she wrote:
“My publisher is an academic publisher. First she needs to obtain an agent. The way to publication is through agents. Once one has an agent then one works with editors. I hope this is helpful.”
I hope this information offers if not practical help, at least knowing there are folks out there receiving your requests and doing what we can to further them!
I was so sorry to read this today. Your story is very similar to mine as I relapsed suddenly in January 2019, 1.5 years after transplant for B cell ALL. My life had been returning to normal and the relapse suddenly broke everything that was going on in my life, again. Cancer can be such a beast. But that said, treatments are improving and developing as we speak, there are a lot of clinical trials too. I wish you a cure from this disease and will keep you in my prayers.
I emailed American Airlines your message. regarding book publishing, I have only published technical material and don’t have experience with non-technical work. However an easy way to get your book to the readers might be to explore self-publishing using Amazon kindle. It is very cheap and also allows you to sell your book in Amazon.
Elana:
I have followed your story for years. I continue to keep you in my thoughts and prayers. May you get your chance at that 10 years and more.
Best wishes
My dear Elana,
Yvonne’s friend – Roberta, here.
My 1st response is NO!!!!!!!! to the cancer & Yes!!!!!!!!!!!!!!!! to you.
This is so outrageous that you have to suffer thru another round of chemo, etc.
I so loved seeing you again in July.
As you know, Daniel is one of my most favorite people in the world & now you join him as a favorite.
I am a firm believer in prayer so I’m sending industrial strength prayers to you. I’m too old for bone marrow but not too old to send you grit, tenacity, strength &
determination. I’m convinced that you have a lot more to give to the world so I’m sending that message out into the universe with even more exclamation points. I’ll be signing up for your newsletter & waiting patiently for news of the next steps in your recovery.
I’m happy to head up your Northern California fan club so just say the word. In the meantime, ginormous love & hugs. Roberta
Fuck fuck fuck fuck!
I’ve got you on my thoughts and I tweeted AA.
Much love to you.
Elana,
“Suffering is the meaning of our world. For love is the meaning. And love suffers. The tears of God are the meaning of history.” I have followed you from the beginning. I have thought of you often. You are a brilliant, courageous and beautiful woman. I don’t know why this is happening to you. It is not fair. It sucks. I am praying for you from the heart.
Love and Courage,
Michael
I Have Arrived, I am Home.
In The Here And In The Now.
I Am Solid, I Am Free.
In The Ultimate I Dwell.
(Thich Nhat Hanh)
A Lotus For You, A Buddha To Be
xx.
I too thought the lack of emails from you meant you were living your life after cancer. Your emails and writings are beautiful and poignant but I am always afraid to read them. I am a relapsed Hodgins’s Lymphoma and Invasive Ductal Carcinoma survivor so I know reading a test result or lab can bring unwanted news and brings up strong emotions. So there it was in your email, the news I dreaded and am so saddened to read.
Just 2 days ago I asked my older daughter to consider being a donor as her younger sister is. I sent her your email. Also, I have sent my AA tweet. Finally, I am strongly considering signing up for you Life Teachings program. I’ve been envious of your one on one patients, now I can virtually be one too.
Thinking of you and your loved ones. Anxiously awaiting your next update.
Cathy
GAGH I could punch something right now. 🙁 Sending positive thoughts your way … wish I could send some bone marrow along with it but I am in the Registry, so there’s that.
Have you reached out to Lucy Kalanithi, Paul’s wife?
She could put you in touch with his agent.
I hold you and your family in my thoughts, heart and prayers.